Pamela Roberts with her daughter

Pamela’s story: ‘I don’t want to hide away because I’m not ashamed of having dementia’

This Dementia Action Week we hear from Pamela Roberts, a woman living with dementia working to make her local community in Longridge dementia friendly.

This week (May 21-27) is Dementia Action Week.

One person develops dementia every three minutes, yet too many face it alone. That’s why we’re calling on everyone to take action to improve the everyday lives of people affected by dementia.

For Pamela Roberts, being diagnosed with dementia came as a shock, but she’s determined not to be defined by the condition.

As well as striving to live well with dementia herself, Pamela’s helping her local community in Longridge to become more dementia friendly.

Watch the video below to hear from Pamela and read her story below.

Pamela’s story

'Since being diagnosed with dementia, at first I was in shock and I thought oh that's it then – rubbish. But now I think I'm just going to do as much as I can to live as best as I can and help others as well who have got it.

'As soon as we came out of the doctor’s surgery after being diagnosed, my daughter Joanna said 'oh let's just go on a cruise,’ because I've always wanted to. I want to make the most of life. I don't want to sit and hide because I'm not ashamed of having dementia. I've got it and it's not my fault, so why should I hide away?'

Living with dementia has meant changes in Pamela's life, but lots of things haven't changed

'I struggle with speech, sequencing (I can't coordinate a meal), memory as well and fatigue - I get tired all the time.

'But I'm still the same person – I'm still capable of work and going out and having a good time.

'That's important to me, I like socialising. I like getting together with other women and having a right good chat and a laugh. My late husband, he was a really jolly person and made me laugh a lot and I don't want to ever lose that.'

Relationships can also come with new challenges, as Pamela learned after her diagnosis

'I lost a few friends when I got diagnosed. It's quite common that. I don't know whether it's fear or because they don't know how to speak to you.

'They would have a normal conversation with me before they knew, and then they found out and avoided me like the plague. To people like that, I would say, 'I'm just me. I'm still the same person. I might just struggle with speech now and then or I might forget things.'

 

Pamela at home with family

Pamela at home with family

'When I told my best friend, she was really upset for me and she thought to herself 'what can I do for Pam?' And she just thought, well I'll just be a friend, just like I always am.

'And that's all I want. Just to be the same as she's always been with me. And she's great, she just makes you laugh, she's really funny. They call us the two Ronnies when we're together. That's how I want everybody to react, but unfortunately they don't.'

Since her diagnosis, Pamela has been working to make her local community dementia friendly

'I'm involved in Longridge dementia-friendly steering group. We try and make as many dementia friends as possible. We help businesses become dementia friendly and we're starting on health now,  targeting the GP practices, chemists, local hospital and care homes.

'When I gave a talk to student nurses I explained how my late husband John and my mother-in-law had dementia, and then I said how I've been diagnosed with Alzheimer's. You could literally hear a gasp. But I told them, I'm still the same and I can still do things. We're going to Ukraine soon to help a charity.

'Afterwards they did the Dementia Friends session, and a lot of them came up to me and said ‘I couldn't believe that you had dementia and think it's really great you're doing this’. If you can just help one person then it's good.'

Pamela suggests one simple action we can all take to become more dementia friendly

'The action I want people to take is to just treat me the same as you've always treated me. Still being invited out makes you feel like people are not ashamed to be seen with you or frightened to have a normal conversation with you.

' go shopping with them, go for a brew or coffee. It's not that we want anything different in a way, it's that we want to be able to fit in just the same without stigma. Or without people thinking 'oh you can't join our group because you've got dementia'.

'It's important people become more aware of dementia and that the stigma goes - there's a big stigma. I'm not a kid, I don't want to be talked to like an idiot!'

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4 comments

Add your own

i am so scared since being told i have vasculer dementia.no one to help people seem to go away so i m not telling any one else. where to get some help????
gene

Hi Gene,

Sorry to hear about your diagnosis - it can be a scary time but please know that we are here for you.

You might want to call our helpline to get tailored advice and learn about the different types of support available: https://www.alzheimers.org.uk/info/20012/helpline

If you're based in England, Wales or Northern Ireland, you could also use our service finder to find support in your local area: https://www.alzheimers.org.uk/find-support-near-you

Some people living with dementia find it helpful to talk with others in similar situations in on our online community, Talking Point. You can read their experiences, share or your own or ask a question here: https://forum.alzheimers.org.uk/

Finally, we've got lots of advice and information available on our website. If you have a specific question or need, let us know and we can try and point you in the right direction.

Thanks,

^Kyle

Are there dementia groups in Olean New York?If there are please let me know @ gmail [email protected] Thank you.

Hi Marcia, thanks for your comment.

We're a UK-based charity, so don't know too much about dementia groups in New York.

You might want to try an American organisation such as Alzheimer's Association to see what's available near you. Visit their website here: https://www.alz.org/

Thanks,

Kyle

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